When food challenges seem to fail...

OH!...... BOTHER!!

'Baby's' at it again... sniffling and snivelling like a good 'un!

I mean, I wouldn't mind, but this has been going on and on for months - off and on - in fact, ever since she started school! I know, I know, they catch all sorts at school, so it was bound to happen, really, but I really need to get on and do another milk challenge* with her! And they're really not advised, if your little one is not in tip top condition - they tend to have a stronger reaction, if it all goes pear-shaped! Good health being required for a milk challenge, finding a time when 'Baby' has been well enough to challenge, has become a challenge in itself!

BAH!!

Our last milk challenge was months and months ago (read about it here). It started well... but then, well events overtook -the final bit of emptying-flat-for-sale coincided with being unable to nail down the dietitian. By the time she got back in touch, we'd lapsed from our daily biscuit and suddenly, it seemed 'Baby' wasn't tolerating them any more.

Strange! 

And incredibly disheartening! It had all been going so well - we'd never got this far before. And nobody had ever mentioned the merest possibility of going backwards! Going back down the 'Milk Ladder,' that is!**

Once upon a time, you'd have hardly heard it mentioned - on Twitter, FB and the like - but now it seems that almost everyone (well, almost every allergy Tweeter) is talking about 'Food Challenges' and 'The Milk Ladder.' Partly, I think, that's because it's taking a while for research and good practice to filter through to grass roots level, as it were, and partly because there's a lot more of us allergy mums out there, who are blogging and tweeting about it now.

It's a good thing, I think - the more people share about the nuts and bolts of their experiences... well, it informs others going through the same thing, doesn't it? Particularly when getting hold of good advice can sometimes prove a challenge in itself! 

I get really excited (and envious) when I hear of children passing these challenges and moving onto the next stage of their allergy journey - hopefully progressing towards the point in time where they'll completely outgrow it. I heard of two stories like that, just the other week! One from Heddi, of Dairy Free Switzerland. You can read about it here. The other, Lisa Wadell - Specialist Peadiatric Allergy Dietitian and fellow allergy parent.

I must admit, whilst it is exciting to hear of any child succeeding in outgrowing an allergy, I get a particularly thrill when I hear of a child with milk allergy growing out of it - because that's our nemesis too! It gives me hope... that one day that will be us!

The statistics look good: MOST children outgrow their milk allergy, by the second decade, according to Dr Adam Fox - speaking at The Allergy Show.

'Baby' is convinced. 'Mummy, when I grow out of my milk allergy, can I have...?' is an oft heard refrain! Now that she mixes with other children her own age all the time, at school, she's become acutely aware of the differences, that before, did not matter... that I shielded her from, in our own little free from world. 

Around the time she started school, she declared that she would like a carton of cow's milk for Christmas. Such glorious optimism! So sadly misplaced! Instead I got her this:

Yes, it's not a real carton of milk - but the nearest I could get!

I'm afraid I'm not quite so optimistic. Remember, of all the Disney characters, I think I identify most with Eeyore? Part of me secretly worries that maybe we'll not fall into that glorious MOST, but fall by the wayside into that.... SOME! 

After all, it does happen that some don't make it, or the statistic wouldn't be there! 

I was particularly pleased to hear, therefore, of the progress of Lisa Waddell's children. Ages ago, I seem to remember her wishing me luck (via Twitter), when, once again, we embarked on a milk challenge (we've had quite a few now). From what I remember, she seemed quite despondent, as, in their circumstances, there had been no change. 

The received wisdom at that time, was that most children outgrow their milk allergy by the age of two - although I think, at the time, that was being revised upwards to about four or five. Lisa's children were a bit older than that! It wasn't looking good! However, the tables have turned, Lisa's children are now working their way up the 'Milk Ladder,' and, interestingly, it seems that, like us, they have sometimes suffered setbacks too - where things have seemed to go backwards rather than forwards! 

Huzzah! 

Maybe we're not quite so strange, then! Maybe we haven't completely slipped off the ladder, after all!

I'm also cheered by Lisa's experience, because as a Dietitian (working for Nottingham Food Allergy Service) she has to advise others on how to go about a milk challenge. Having been through the experience herself, as a parent, it seems to me, that it leaves her in a far better place to offer advice - she knows exactly what we're going through! 

You can follow her via her 'Food Allergy Nottingham Service' Face Book Page, and on Twitter (@lis_wad). She is also available for private appointments.


Meanwhile...

Apparently, it's better to go through a food allergy and fail than not attempt one at all! Recent research suggests that it leads to a better quality of life - because you've faced the worst and got through it! 

So there you go! 

Don't believe me? Read about it here!


SO the message is: if at first, second, third, etc. etc. you don't succeed, don't give up... just yet!

Glossary:

*Milk/Food Challenge - when you try to find out whether an allergic individual is still allergic to some food (in our case, it's quite obviously a Milk Challenge). 

**Milk Ladder - this is a term referring to a structured approach to reintroducing milk to an allergic individual. It begins with the individual being able to tolerate a product containing a small amount of baked milk (baked milk is most easily tolerated) and progresses through milk in various processed forms, until milk itself can be tolerated. I have seen various versions of this, but my preferred version is in twelve progressive stages. I have seen it shared quite widely (online) but have not done so, for two reasons: out of respect for the author, whose permission I do not have, and because it really ought to be followed under proper medical supervision.

Related Posts:

Challenging 'Baby'

Challenging 'Baby' - the adventure continues?

Challenging 'Baby' Again!

Challenging Baby Again!

Day Four! 

The end of Day Four, to be precise!

I'm finally allowing my hopes to rise.

We're challenging Baby again. It's a bit overdue. I'd put it off due to this or that - you're meant to make sure they're completely well, for one thing, but also I was waiting for a time that was convenient. Holiday time certainly wasn't!

A 'challenge' by the way, is the means by which you test whether an allergic person can tolerate the food to which they've been allergic. If you're likely to have an life-threatening anaphylactic reaction, this would have to be carried out in hospital. 

'Baby' has had a Non-Ige allergy. This means her reactions are delayed. Not life-threatening, but real nonetheless. So our challenges - agreed with our dietitian - take place at home.

It wasn't a planned challenge, by any means. We were out. Someone mistakenly gave her a biscuit. They had no idea she was dairy free and for once, she didn't ask. Hence I found her happily munching on a malted milk. 

One of these:

'Cow biscuits' as they're otherwise known!

'Too late!' she uttered gleefully when I asked her about it.

She certainly enjoyed it.

'Oh well!' I thought, 'there's not much I can do about it now. We'll just have to go along with it and see what happens.'

So we did... and nothing happened!

'Oh!' I thought, 'well in that case, let's try another and see what happens.'

There was only one problem - I had no Malted Milk biscuits in the cupboard, so I bought a pack from Poundland. Previous experience (see here) suggested we weren't going to get very far, so I didn't want to spend too much on them - just in case the rest of the packet was going to waste. I made sure I checked to make sure they had milk in them (sometimes cheaper biscuits don't).

So anyway, we tried again... and she was fine with that one too!

No tummy ache, excessive wind, disturbed sleep, sore bum or dodgy poo!

Yesterday she had a rash, on the front of her torso, but it turned out that it was just heat rash. Left to run around without her clothes and with a fan on, it disappeared within an hour or two!

'Baby's' itchy rash

Then she had a tummy ache late afternoon, but she hadn't eaten much lunch, and it soon disappeared once she had eaten a nice cream! 

One thing I have learned with 'Baby' is that sometimes a tummy ache might not necessarily be a sign of a reaction. It could be because she's hungry, constipated, got a tummy bug (she's had a few), or because she's about to produce a poo. So every tummy ache has to be considered in context and sometimes we just have to wait and see what will happen.

If it is milk related, then repeated exposure has meant tummy aches and dodgy poo and so on become more frequent, to the point where they can no longer be ignored. 

But today? Still no signs - nothing!! 

So it's a BIG FAT HUZZAH and Hallelujah!!

Originally we were told 4 or 5 days, with a biccy, but I'm still playing cautious, until after the weekend. Then I upping the anti - we're going to two malted milk biscuits, as per the 'Milk Ladder' 

For those of you not aware of what a 'Milk Ladder' might be, its a programme for reintroducing milk. Starting with baked milk, in biscuit form (baked milk is more easily tolerated than straight milk), it progresses in twelve stages, to the point where you're on the real white stuff - y'know - cow's milk.

Who knows how far we will get up the ladder on this occasion, that's still to be determind, however I was interested to read this article, which states:

 it appears that many children are taking longer to ‘outgrow’ their milk and egg allergy, a period of time that corresponds to the increasing utilization of strict allergen elimination diets for the treatment of children with these allergies. Recent studies indicate that about 80% of young children with milk and egg allergy can tolerate these foods in baked forms, that is, extensively heated proteins that have become denatured, and that the addition of heat-denatured proteins into the diet actually leads to more rapid development of tolerance to all forms of milk and egg

So, now that 'Baby' has started to manage some baked milk is a good sign. Up 'til now this has not been the case.

I have to tell you that now that she is older 'Baby' has become more aware of how she is affected by her allergy to milk - how much she is missing out on. She is ECSTATIC that she can now have Malted Milk biscuits (I don't blame her, I used to love them too). 

Yesterday, she told me she wants a carton of milk for Christmas.

Bless her!

Here's hoping!!

Challenging Baby - the adventure continues??

Whoever, first compared life to a roller-coaster was quite right, weren't they? Give that person a gold star, I say! After all my nervous excitement, the other day, it seems like we're back to Numero Uno, Square One!

Not daring to trust that Baby had truly passed Stage One - the biscuit-containing-milk-as-an-ingredient challenge, I decided to try Baby out with the biscuit that's always been her stumbling block before. Why? I don't know. I just had an inkling that until she conquered this one, she wouldn't be ready. Perhaps one of the tastiest biscuits EVER invented, it's the good old Malted Milk, or 'Cow Biscuit,' as it's otherwise known.

Instead of opting for the traditional shape, though, I bought a packet containing several small bags, as, this way, if the challenge failed, I hadn't wasted a whole pack of biscuits and could keep the rest of the sealed bags for next time.

You can get them in little bags, these days!

I discovered, on opening the first pack, that there six of these inside:

They look fun, huh?

Six seemed a bit excessive for a first go, so we gave Baby three - which we judged to be about the same as one normal Malted Milk biscuit. In hindsight, maybe one would have been better, for a first go! I would have loved to have eaten the other three, but, being gluten free now, I couldn't, so The Hub had the rest. She, (quite predictably) loved them and was most upset with Daddy for eating the other half of her pack!

Once she'd eaten them, all we could do was sit and wait, to see what happened next. Baby seemed fine, so we tried again the next day. That night she didn't sleep that well. But Baby's often disturbed in her sleep and had a cold, which was more likely to make her restless, so I pushed that to one side. She passed wind, quite a bit this morning (and quite loudly, too), but I put that to one side. After breakfast she complained of tummy ache, but she was overdue a poo, so I put that to one side too.

When she did her poo, though, (avert your eyes if this is too much information for you) it was quite soft, not hard (as it would be if she was constipated) and it was more yellowy than normal. It was the familiar mustardy yellow colour caused by milk. It stank to high heaven too. As I cleared it away, I could see that her skin was beginning to look irritated. That's when I knew that the game was up!!

When Baby has a nappy like this, it's important to clean off all traces of poo really thoroughly, preferably with cotton wool and water. Any poo left on the skin will continue to irritate, as it contains acid. In fact the best thing to do, is really to dunk Baby in the bath. Usually, this leaves the skin nice and clear. Once the skin is clean, it needs a barrier to protect it - in the event of any further episodes. Vaseline is undoubtedly the best. A thick layer of that really does the trick.

I'm so glad I didn't go straight to Stage Two. She obviously wasn't ready, yet. It would have probably have left her very discomforted. It leaves me wondering though - whether we need a list of biscuits, ranking them in order of those least likely to affect one to those most likely. That way we could work our way up the scale, until Baby's ready for the next stage. If you know of one, do let me know, won't you??

So, we're back to the drawing board again - at least for now, anyway. Although, not quite! She's never got this far with a Malted Milk before, so she's improving - albeit maddeningly slowly!!

Related Posts:

Challenging Baby!

Challenging Baby!

Well, there's no doubt that 'Baby' has become more challenging recently. Three full-length toddler tantrums thrown today. However, this post's not so much about challenging behaviour as about Baby's response to cow's milk protein.

Diagnosed as cow's milk protein intolerant (we've since found out that this is an out-dated term - she is allergic to cow's milk) at the grand age of one month, we were assured by the pediatrician we saw at the time, that most children grow out of it by the age of two. That milestone passed, the dietitian shrugged and revised the age to four. 

Well, we've not reached that stage yet, but, now that we've moved, I've requested a referral to a specialist, to which surprisingly, the Doctor very swiftly agreed. No sooner had I made the request, than she was scribbling madly on her pad and informing me that the letter would be in the post. 

All prepared for the third degree, and what-not, I was quite taken aback. I mean I was expecting to have to push a little bit to persuade someone or another, but before I knew it, we were back outside the door. And now, we have the letter! 

Well, sort of. The letter informs us that we have a telephone appointment to assess our needs. 'Hmm! Right! Well,' I thought, 'what on earth will that entail??'

So, in order to prepare myself, I've decided to carry out a kind of audit - height, weight and a milk challenge!

Challenges are something that the Dietitian has asked us to do some time prior to each appointment. We can carry them out at home, because Baby's allergy is Non-Ige and so her condition is not life threatening. Therefore if the milk doesn't agree with her, it will make her temporarily uncomfortable, until it has passed out of her system. In the early days, this meant pretty much immediate excruciating tummy pain, much writhing and wailing, followed by watery, explosive diarrhea and a very sore bum (the soreness comes from acid, produced by the stomach) - all within the hour. It's not something we do lightly - no one wants to see their child in pain. It's only on the advice of our medical professionals.*

It's been quite a while since I've properly challenged Baby. This is because we've had some form of accidental challenge (such a another child 'kindly' giving her a biscuit), around about the time a real challenge was due. This has resulted in bad nappies, wakeful nights, tummy aches, very sore botty etc. The symptoms do seem to have got lessened a bit, over time, in that they take longer to appear, and have been a bit less severe, but, as you need to wait four months for the stomach to properly heal, before trying again, progress has been frustratingly slow!

Usually, a challenge might involve Baby eating a 'normal' biscuit. In the past, I've always gone for Malted Milk - mainly because I assume that they must be quite milky, and I've wanted a definite yes or no! The idea is, that if she's okay with it, we try again - at the same time the next day. And then again, for four days in a row. After that, we would go to the next stage...

So far, we've never gone beyond the first biscuit. Tummy pains, combined with a wakeful night and a 'dodgy' nappy next day have shown that things have improved , but (so far) have not resolved.

However, now we're trying again - starting with Jaffa Cake.  

Spot the difference!

There's various reasons for this choice of biscuit:

1. Grandma slipped her one, the other month, thinking they were okay. Actually, my Mum had seen me give Baby one of my gluten free Kelkin jaffa cakes, (which also happen to be dairy free) but she hadn't realised that they were different. Funnily enough, Baby seemed okay with it, I think. So I've been looking for an opportunity to repeat the experience, as a proper challenge.

2. If Baby loves the jaffa cake, but it disagrees with her, we have our own equivalent - so it's not like giving her something and then taking it away from her again. This is quite important at the moment, as, with growing awareness of the World around her, she's feeling the fact that she's different to others, more and more.

3. It's one of Daddy's favourite nibbles, so if she can't have the rest, then the packet won't go completely to waste!!

4. This time, I'm seeing the challenge as an opportunity to add one more thing to the list of things she can eat, rather than see if she's 'better'.

I have to admit I'm feeling kind of anxious about this. The thing is, it seems to be working!!  She's had four whole days of jaffa cakes!! There have been a few tummy pains, in places, but 'Baby' often has tummy pain of some kind. She often says her tummy hurts when she's hungry, or constipated (she doesn't like eating fruit and veg - it's an ongoing battle). I don't think these particular 'pains' have been of the intolerant kind. She's also had some sore patches, but she can get these from having too much fruit juices. I've been slapping on the Vaseline, though, just to make sure.

As exciting as all this is, though, success at this stage means going on to the next stage. That worries me because after all this excitement, it could mean that at some stage we'll come to a stop. I don't want to put Baby through the pain that this could cause. If it doesn't work, there's nothing I can do about it, I just have to wait for the symptoms to pass. BUT if it does, and she's 'better'... Of course I want her to be well (so I won't have to worry about her eating something by mistake) but now I'm beginning to wonder: what if I, having been dairy free for so long, have lost my ability to digest lactose?? I guess we'll just have to wait and see!

* Food challenges should only be carried out under medical advice/supervision. Your doctor/dietitian is the best person to advise you about your particular situation.